marriage | jmgoyder

Turning corners

by jmgoyder

Corners on King (https://www.facebook.com/cornersonking/?fref=ts) is the restaurant where Ming has worked for just over a year now. It is run by a couple of guys who have very good taste in terms of decor, food, AND picking staff who are willing to dress up for Halloween.

Yes, that is Ming on the left in the above photo. I was feeling a bit blah yesterday morning but, when I switched on my newly-switched-on computer, and the internet rushed into my laptop, this photo was the first I saw.

Okay so it took me a few seconds to realise that it was Ming! Other photos followed and I was so overtaken by laughter that the whole blah thing disappeared. I got showered and dressed and drove into town for lunch with this beautiful nurse.

Once I figure out how to save the photos I took of Ming in his nurse’s outfit, as he and I lunched together during his break, I will post them. It was the most glorious hour of halloween hilarity.

And then I went to the nursing home to see Anthony. I arrived at 1pm and left at about 4.30pm. For these hours I was unable to wake him up no matter how much I shook his shoulders, squeezed his hands, shouted (as quietly as I could) ‘Wake up, Ants!’ His nephew visited, a friend visited, the nurse-in-charge came in and checked his blood pressure etc. and reassured me that all was well. I visited the dementia wing a couple of times, showed several staff and residents the photos of Ming, laughed and joked, in the hope that when I returned to Anthony’s room he would be awake. He wasn’t.

The possibility that Anthony might die during – or soon after – one of these TIAs (which seem to be occurring more often), is a corner I have been hesitant to turn into. I was calm yesterday afternoon, then terrified, then resigned. When I got home, Ming was here, and listened to my tearful fears in the same way I listen to his; after all, we both love Anthony.

It is entirely possible that Anthony will live for many more years; it is equally possible that he will die soon. I am not ready for the latter, despite many attempts to BE ready, and I cannot imagine my life without Anthony in it. His room in the nursing home, the staff who have become such wonderful friends, my arm around his shoulder, our long afternoons watching television, bantering, just being together, sometimes reminiscing, sometimes eating and drinking, laughing, looking at photos, doing paperwork, engaging with staff, residents, friends, relatives, visitors … his room has become my refuge, my home.

Ah, but I do have another home – a place where I can eat, drink, write, relax. I can be one of those trendy people who drink short blacks whilst writing articles about the meaning of life and death OR the proud mother of the waiter at Corners on King.

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An argument about Anthony’s smile

by jmgoyder

You know how I’ve been saying how wonderful it is to see Anthony smiling again, and that I’ve been crediting myself with having made a huge effort to get that smile back? Well, Ming disagrees.

Today was a day off work for Ming so he went to see Anthony and I had a day at home. When he got back he told me that he had Anthony laughing!

Ming: Mum, Dad never lost his smile!

Me: You don’t see him as much so you don’t know – anyway you can always make him smile because you’re Ming!

Ming: So can you and so can anybody!

We left it at that; after all there is no point having an argument about a smile. Nevertheless our brief argument got me thinking about Anthony’s Parkinson’s ‘mask’ (the blank, unblinking, slack-jawed expression on his face, typical of PD). And I realised that the only reason I see this more than anyone else does is probably because, when I visit, I am there for hours so I see the fluctuations.

For example, when staff come into Anthony’s room and banter or flirt with him, he smiles; when friends and relatives visit, he smiles; when Ming and I visit, he smiles. So perhaps I should adjust my thinking to the possibility that it has become easier to conjure/coerce that smile? Maybe Anthony’s smile, and even his laugh, was always there, always ready to be there.

Maybe it was my own smile that went missing for so long.

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‘Doggone!’

by jmgoyder

I’m sure Blaze was calmer last time I took him into the nursing home to see Anthony. This time, instead of following me in, he ran across the road to a block of flats and wouldn’t come back until I sat down in the parking lot and pretended I had food in my handbag.

Once I’d grabbed him, I carried him into the nursing home to see Ants. I had envisioned a cosy afternoon watching television with Blaze on Anthony’s lap, snoozing. But Anthony was in the dining room and, despite staff being able to get him to shuffle, using his walker, nearly all the way to his room, both a wheelchair and the hoist were eventually required to plonk him into his armchair. In the meantime Blaze and I went out into the back garden area, then visited a couple of the residents, then sat in the foyer.

When Ants was settled, I carried Blaze in and shut the door wishing I’d persevered in trying to find his leash. He was too excited to stay on Ants’ lap for long and kept wandering around curiously and trying to get out. He’d been patted and admired by staff and residents so I guess he wanted a bit more action. I accidentally shot a whole lot of little videos when I was actually trying to take a photo. The following is the only one that doesn’t include my expletive-ridden “Why won’t this camera work?”

Giving up on the camera, I took about 50 photos with my phone, which all look exactly like this one.

Fake caption: Man’s best friend.
Real caption: Jules, take this bloody dog away!

In light of this remark, and, after Blaze had done several hundred laps of Anthony’s room and bathroom, refused to relax on Anthony’s knees, turned his nose up at the water in the water bowl I’d brought in, I decided it might be time to go.

It was at this point that I realised there was a power failure because I couldn’t get Anthony’s television to cooperate. Then I got a text from my mother asking me if I were coming to my brother’s barbecue. I answered saying I thought the barbecue was the next day and I had Blaze so might only be able to drop in for a quick drink.

Unfortunately, my departure from the nursing home was delayed when I couldn’t find my car keys. It was suggested by several Blaze-loving staff that I could re-trace my steps. So I shut Blaze and Ants into Anthony’s room and went back to the flats where Blaze had first run away. No keys. I then went back to my car and looked underneath. No keys. Back inside the nursing home, I went back to all of the residents I’d visited. No keys. I went outside to the garden. No keys. I went back to Ants’ room to find them both nonplussed as I emptied my handbag of all its contents. No keys. I rang my mother and said, “No keys”.

Finally (an hour and a half after annoying everyone in my vicinity, especially Ants!) I remembered sitting in the foyer with Blaze. With hope hugging my heart, I shut Blaze in with Ants and ventured to the foyer and … there they were!

I said a (b)elated goodbye to all, gave Ants a big kiss, and came home, promising myself I would never take Blaze into the nursing home again without a leash; and never ever again lose my car keys.

Today, the latter has already happened!

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An auspicious occasion

by jmgoyder

Here is a photo of my dearest old friend and me at his wedding brunch the other day.

My dearest old friend, who I have known for over 40 years, got married last week and on Saturday morning a group of us celebrated at a beautiful apple orchard up in the Perth hills.

My dearest old friend, and his partner of 17 years, exchanged rings, and spoke of their love for each other eloquently; a priest, who has known my friend for longer than I have, gave a heart-felt blessing; and then two other friends toasted the happy couple. I had the honour of sitting on my friend’s right hand side during a delicious brunch.

My dearest old friend makes me laugh like nobody else can, cooks the best shepherd’s pie ever; performed Anthony’s and my own wedding ceremony; and was the first person (other than Anthony) to see baby Ming.

My dearest old friend is the only person in the world who can convince me to wear ‘a frock’ (well, I compromised by wearing a skirt).

I am so happy for my dearest old friend and his partner!

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There’s ‘a Julie’ in the mirror.

by jmgoyder

There is something beautiful about the fact that sometimes Anthony will see the same camellias I picked for him days ago as today’s – new and fresh.

The other day, as I was leaving Ants to come home, he spotted my reflection in his wardrobe mirror. (His armchair is in one corner of the room and, if he turns his head to the right, he can see himself in this mirror).

Anthony: There’s a Julie over there.

Me: (turning to face myself in this mirror) Yes, that’s me … actually that’s US in the mirror.

Anthony: Oh, of course.

Me: You idiot!
(Don’t be alarmed; Anthony quite likes a bit of gentle verbal abuse now and then).

Apart from the visual hallucinations (often of cats which is weird because Anthony doesn’t like cats), there is also a certain amount of visual confusion lately. Ants’ view to the left is through a window overlooking a lawned area where he often sees cattle; the newsreaders and/or characters on television are sometimes mistaken for real people to whom Anthony will often respond verbally; his walker can become a lawnmower; the staff going up and down the hallway are ‘kids’ or ‘teachers’ or long-deceased relatives; and the blanket on his knees (lately a source of enormous confusion as the day progresses) is unrecognisable to him as a blanket until ….

Me: Will you stop pushing the blanket off! I thought you were cold, Ants!

Anthony: It’s just … I don’t know what this is, Jules.

Me: It’s a blanket, to keep you warm, so I’m going to put it back on your lap and put your hands under it and, if you move, I will bop you!

Anthony: You’re beautiful when you’re angry.

Me: Argh!

This particular blanket has a tartan pattern and a fringe, and is one of ours from home. Other rugs and blankets (particularly those with patterns of any kind) can really confuse Anthony, but I have only recently realised this. For example, if the pattern is one of flowers, Ants might see these as real flowers and want to touch or rearrange them.

None of these visual hallucinations/misrecognitions currently cause Anthony undue distress, especially when I am with him. On the other hand, I sometimes wonder what he might be ‘seeing’ when I’m not there. When I think about this too much, I get worried, so I mostly try not to think about it for the sake of my own peace of mind. After all he is in good care.

But I just wish I could somehow leave myself in that wardrobe mirror so that whenever Anthony glanced to the right I’d be there….

…. like the camellias.

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A brief moment of panic

by jmgoyder

Yesterday morning I received a phone-call from the nursing home manager to say that Anthony had had a ‘turn’, most probably a TIA (transient ischemic attack or mini-stroke). He has had these before but this time he was unresponsive for ten minutes.

As I rushed into town, I experienced a brief moment of panic even though I knew Ants had recovered from the TIA, because the more of these he has the more likely it is that he will have a serious stroke. On the other hand, he has been having TIAs from well before I knew what they were and twice, when he was still living at home, I had to call the ambulance. And, during his years in the nursing home I suspect he has had more of them than anyone realises because he sleeps a lot anyway.

Four years ago, at the huge 75th Ming and I held for him here, I remember being fairly certain it would be Anthony’s last birthday. His prostate cancer was well advanced and so was the parkinson’s. Daily tasks had become extremely difficult for him and I was exhausted. Perhaps it was this exhaustion that made me more accepting of the fact that he might die soon.

But now that all his care needs are fulfilled by the nursing home and I have the leisure to simply enjoy Anthony’s company, the thought that he might die soon is unbearable. Having outlived his prognoses by several years already, I have become used to the idea that he will continue to live for a long time.

So the thought that he might either die or become even more incapacitated by a stroke is horrifying. I can’t imagine my life without him but maybe I should prepare myself a bit. Who knows?

Anthony’s fortitude amazes me; he is so resilient! When I said to him yesterday, “You had one of those mini-strokes again, Ants”, he retorted, “No I didn’t – I just fainted.”

But for the rest of the day he kept hold of of my hands with both of his until I left to come home with the usual goodbye.

Anthony: Don’t be long, Jules.

Julie: I’ll be back soon, my beautiful man!

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The dilemma

by jmgoyder

One of Anthony’s favourite nephews visited on Father’s day last week and wanted very much to take us for a drive. He already knew how difficult this could be and that I had decided, months ago, to stop trying to do this by myself.

Of course, with the nephew there, Anthony rose to the occasion with alacrity and, with only a little bit of help from me, was able to walk up the hallway and outside using his walker. Another ‘plus’ was that it was morning and Ants is almost always more mobile in the mornings. Getting him into M’s 4WD vehicle proved to be a ‘two-person’ challenge but we did it!

It was a chilly but sunny day so M drove us around town and eventually to a cafe where I zipped in to get coffees and cake that we could eat in the car. Over the last few years, we have done this several times, and I have by myself of course, but M’s determination to make this work, to get Anthony out and about, has been such a blessing to me. I hate to ask for help but I am always happy to say yes if a tangible plan is offered and M always does this.

On the way back to the nursing home, M suggested that we park near the restaurant where Ming works – Corners on King – in the hope that Ming might be able to come out and say ‘Happy Father’s Day’ to Ants. This was a great success and then, on returning to the nursing home (just before lunch) Ants was still mobile enough to use his walker to get back to his room, with us by his side.

So what is the dilemma?

Okay, it is this: It is a very long time since I have brought Anthony home to the farm. Often he will ask me to take him home to his childhood home; sometimes he will ask me to light the fire in his nursing home room (thinking that we are home), and I will simulate doing so. His fantastic nephew, M, and his younger brother, J, want me to bring Anthony home and solicit their help.

These gestures are wonderful but what many people don’t realise is that Anthony now has his own Parkinson’s disease dementia. This means that he only occasionally remembers home.

I am doing my best, but it is a daily dilemma.

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Spring chicken

by jmgoyder

One of the best things about getting chooks again is telling Anthony the stories that go with the chooks. He gets a real kick out of my ineptitude.

A couple of days ago I picked up another couple of chooks from some serious breeders who go by the name of Chookloop. As soon as I got home, I put them in the chookpen with the other four but they’re a bit smaller so the big ones started pecking them and one of them was smart enough to figure out how to get out of the chookpen – argh (it took me ages to catch her).

So I brought them inside and put them in a box on the back veranda with some food and water. But, as soon as I turned my back, the smart one flew out and followed me into the kitchen where she hid behind the fridge until I was able to ease her out with a fly-swat (another hour).

I ended up putting them outside the back door in an upside down laundry basket which is where they spent their first night. The next morning, I went out to replace their water and, as I was doing so, the smart one got out, so I let the not-so-smart one out as well. They had a wonderful time frolicking under the fig tree. It was only when I attempted to catch them and put them back under the laundry basket that I realised I might need yet another set of ages/hours.

Notsosmarty was relatively easy to grab, but Smarty eluded me for well over an hour. I finally had to give up being gentle and simply threw myself into the shrubbery under the fig tree in a kind of football tackle which left us both muddy and disgruntled. I gave her a little cuddle, she pooped on me, and a friendship was born.

Since then, they have both spent a couple of nights in the ground cage we raised the guinnea fowl and peafowl in eons ago. I’ve placed this inside the chookyard so that the other chooks can get used to them without being able to peck them. They are also protected from crows, but they do look a bit miserable this morning because it is so cold and wet.

It is great to be able to answer the dreaded question, “So, what have you been up to lately?” with, “I have some new chooks!” instead of my usual, faltering, “Oh, this and that.”

It’s quite refreshing, too, to be able to give Anthony some new news and, as he has always loved chooks, it is a mutually enjoyable topic of conversation. What I like most about this is that the new chooks, despite reminding us both of previous chooks (and even chooks Anthony may have cared for as a child), are a fresh addition to the conversations we have in the cozy world of his nursing home room.

Okay, a bit of dialogue:

Anthony (referring to ‘my hero’ of yesterday’s post after she popped in with his clean laundry): That’s the girl, right?

Me: Yes – she is wonderful.

Anthony: And she’s on our side isn’t she.

Me: Of course!

Anthony: Your hair needs combing (oh why is this such a preoccupation with him?)

Me: Why the hell are you so obsessed with my hair? It’s windy outside, and raining. I’ve battled a storm to come and see you and all you can do is criticise my hair! I’ll have you know this is the best cut and colour I’ve ever had and I adore my hair-dresser.

Anthony: Give me a comb.

Me: What? Why?

Anthony: I can fix you. You’re still a spring chicken.

Hence the title of this post which, remarkably, ties in with the chook thing – ha!

PS. After Anthony combed my hair, I ruffled it up a bit and he smiled the benevolent smile of a chook-owner.

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Going with the flow of dementia

by jmgoyder

Here is one of my conversations with Anthony yesterday –

ME: I think we should get chooks again, Ants.

ANTHONY: Yes – good idea.

ME: But this time we should keep them in the chook-yard and not let them out at all – safer from the dogs and foxes. What do you think?

ANTHONY: So when do you start work?

ME: What do you mean?

ANTHONY: F said you’d be working for R.

ME: The vet?

ANTHONY: The veterinarian.

ME: Okay, the veterinarian if you want to be precise! Well, I’m not sure. Do you think I’d be any good at it?

ANTHONY: Yes, I do because of the chooks.

ME: Well I do love animals ….

ANTHONY: You’ll be fine.

There is a fair amount of debate around whether to ‘go with the flow’ – or not – when it comes to interacting with people who have dementia. With Anthony, I tend to fluctuate between ‘going with the flow’ and telling the truth so yesterday I suddenly became a vet.

But other times, when, for example, he is worried that his mother is home alone, I will gently remind him that she died many years ago. He usually accepts this quite well and is sometimes a bit embarrassed that he has forgotten this fact.

‘Going with the flow’ isn’t so simple though. If someone with dementia thinks there is a monster under their bed, it’s obviously not a great idea to agree. But if someone with dementia thinks there is a family pet under the bed, it’s obviously a great idea to agree.

Carers who work in nursing homes walk a tightrope of tact when responding to residents who have dementia. Alleviating dementia-induced distress can be a minute-by-minute challenge.

As Anthony is my husband, I don’t have to be quite so tactful with him and will sometimes go as far as to say, “You’re talking rubbish again!” OR “You’re hallucinating again!” We can turn the confusion into a joke and/or a hug that way.

Anyway, here they are – the two new hens. I was feeling a bit biblical so I have named them Martha and Mary. Mary is the one with the black feather marking. As you can see they have a huge yard!

I can’t wait to show these pictures to Anthony this afternoon!

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Whoops!

by jmgoyder

Oh I am such an idiot!

Okay, this is what happened. I stayed with Anthony later than usual this afternoon because his favourite nephew arrived for a visit and I didn’t want to miss out on that. Then, Anthony’s 5pm dinner arrived as the nephew was leaving, so I ended up helping Ants with the soup, mornay and dessert.

Once that was done, I turned the television onto the ABC News channel and put it on mute as I gathered my stuff to leave. Usually I say I am going shopping, or to the chemist and I’ll be back soon but tonight I told the truth.

The only reason I admitted I was going home was because the first thing he said to me when I arrived this afternoon was:

You didn’t come back last night. Where did you go?

Now the trouble with lies is that sometimes you forget them. So I said:

I can’t remember!

Anyway, as I was putting a jumper on him, and getting a blanket for his knees, and putting the two camellias I’d picked into water, and settling myself into a chair next to him, I suddenly remembered. The following is our conversation:

Me: That’s right! I remember now!

Anthony: You always say I’m the forgetful one.

Me: Well I’m getting just as bad. Anyway, I went home to make the pea and ham soup – remember I showed you those massive ham hocks?

Anthony: Where is the soup?

Me: Whoops – I forgot to bring you some. I will tomorrow. Sorry!

Anthony: Well I’ve just come back from U. and I.’s place in Serpentine. [Note: these relatives are deceased, and Serpentine is 160 kms north]

Me: Really? So you must be exhausted!

Anthony: Yes. So I just want you to get some paper animals in the glove box.

Me: Okay – anything else?

Anthony: A couple of paper animals.

Me: Which ones?

Anthony: Well, they should be in the letterbox … but dead.

Me: Don’t worry, I’ll take care of it.

Anthony: You might be sitting on them. Get up.

Me [getting up]: Nope – no paper animals.

Anthony: They don’t appear to be there.

Me: You’re hallucinating again, Ants.

Anthony: You always say that.

Me: Can you just shut up so we can watch the series?

Anthony [fussing with the blanket on his knees – a constant thing]: The little chap’s had a good day; he hasn’t moved much.

Me: That’s good. It means he’s happy, Ants!

So the fragments of our afternoon conversation ranged from eloquent to incoherent, nonsensical to logical, silent to noisy etc. and I still haven’t figured out if the ‘little chap’ on Anthony’s knee is baby Ming or a dog!

All in all, it was a great afternoon but, just as I was leaving, Anthony suddenly became agitated.

Anthony: But you can’t leave me here. We need to be in the same bed.

Me: I have to go home to rescue the pea soup and I’ll come back tomorrow morning.

Anthony: Why can’t you stay here with me tonight? I don’t know this place! I’ve only ever stayed here once before and it’s where J. and P. got married.

Me [sternly]: Listen, Ants, you are in a nursing home and you are sleeping here tonight and I am going home but will be back tomorrow morning.

Anthony: No!

At this point one of the wonderful carers, having overheard our conversation from an adjacent room, came into Anthony’s room to reassure him and I gave him a millionth kiss and left.

It’s the first time for ages that I have felt distressed driving home. No tears but just distressed that he was distressed.

So an hour ago I rang the nursing home and the nurse-in-charge told me that he had just been settled into bed but she would go and check again. She is, by far, Anthony’s favourite and, when he was upset and confused earlier he actually asked for her by name, describing her as the nice one in the red shirt. She has even been nicknamed his ‘girlfriend’.

Anyway, I’ve now decided to never ever tell Ants that I am going home – never! I will go back to saying things like:

Just going to the chemist to get toothpaste; what kind of chocolate do you feel like; do you want beer? etc. AND: I won’t be long – see you soon….

No more whoopsies!

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jmgoyder

wings and things

Turning corners

An argument about Anthony’s smile

‘Doggone!’

An auspicious occasion

There’s ‘a Julie’ in the mirror.

A brief moment of panic

The dilemma

Spring chicken

Going with the flow of dementia

Whoops!

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